What is Rare Disease Day and Why does it Exist?
106 different countries coming together to support the 300 million people diagnosed with Rare Diseases throughout the world. This takes place every Year on the 28 February (except during a leap year-the rarest day of the year). Thousands of events across the world advocate for those with Rare Diseases. Connecting with others to ensure equality of healthcare provision and understanding. Through patient led individuals, known as Rare Disease Heroes and backed by healthcare professionals to challenge and promote action for those most vulnerable within society.*
Expect to see plenty of colour as major buildings throughout the world are illuminated and social media accounts take on a splash of Rare Disease lines and colours!
What Is A Rare Disease? The Facts!
A condition that affects less than 1 in 2000 people.
72% are Genetic Conditions
3.5-5.9% of the population are affected
Over 6000 medical conditions, characterised by a range of symptoms can vary not only from one condition to another but also from patient to patient.
Diagnosis can be difficult as common symptoms may hide an underlying rare disease leading to misdiagnosis and a delay in beginning treatment.
Patients quality of life is often affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
With no existing or effective cures the high level of pain and suffering endured by patients and their families will be heightened further.
Mental Health
When you consider the facts above it’s not surprising thatRare Disease Day reported that 2/3 of people living with a Rare Disease suffered from depression at some point since the beginning of the pandemic. With the NHS already at breaking point Mental Health Patients can easily be lost in the system. Defined as being the most ‘vulnerable’ the addition of conditions developing or current ones re-triggered make the world a scary place to be. Many have hardly left their homes in two long years of stress and worry, despite the speed of vaccine roll out and the lifting of lockdown rules across the globe.
Find Our Heroes
On Disease Day Heroes we can read through stories of 16 different people from around the globe who are living with Rare Diseases. Find out about their medical conditions and how they affect them on a day to day basis. Many more stories appear through social media channels in the build up to and through the actual day.
Rare Disease Illuminations
One of the iconic images of The Rare Disease Day is the illumination of building in Blue, Pink, Purple and Green.
‘This concept originated in 2019 when the Empire State Building in New York City was striped
in Rare Disease Day colours thanks to the work of RocketPharma, a member of NORD’s Corporate Council. The image of such a famous landmark shining bright for Rare Disease Day was an inspiration for many’(https://rarediseases.org/wp-content/uploads/2021/01/NRD-2096-RDD-Monuments-Toolkit_FNL-2-light-up-for-rare.pdf
This year for Rare Disease Day 2022 the focus is on the collaboration of people living with a rare disease, family members, healthcare professionals, industry representatives and even public officials, to help the rare disease community be united by a chain of lights across the world. In light of COVID-19 this chain will serve as one of the symbolic ways to break isolation globally. The more local and national buildings and monuments illuminated all strengthen the international impact!
Getting Involved
The Rare Disease Downloads Page features a significant amount of information from Key statistics and infographics, to printable posters, social media banners and share your colour quote cards. The Information Pack PDF Document covers everything from the History of Rare Disease Day, to previous events and how to use the downloadable documents in easy steps. You may not be able to get a National Building Illuminated but you could have your own illuminations! Light Up For Rare includes a downloadable PDF and a handy video to guide you through.
The Events Page highlights things already in place. Expect more to be added as the day gets closer. From Zoom events to award ceremonies and special podcasts there are plenty of options and ideas.
School ToolKits
Do you know a young child or a family who are struggling with acceptance and/or making friends at school? Are you a teacher, and a student in your class has a chronic health condition? Are you a parent or adult who believes in sharing the values of empathy and inclusion with young children? Do you have children in your sports and exercise sessions? Explaining How Living With A Rare Disease To Young Children has been created to enable inclusion within all these sectors.
It is reported that;
‘Within the Rare Disease Day global platform and together with our national alliance rare disease patient organisation partners, we have put together elements (translated in over 20 languages) which might help you start the conversation with teachers or with young children. Please download them, adapt them, and translate them!'
They continue with this fantastic starting point;
‘A Friendship Story, from established Serbian author Danijela Pešić, also known under her nom de plume Danijela Knez, who herself lives with a rare disease (Pulmonary Arterial Hypertension–PAH). She wrote this book inspired by her own childhood experiences. She collaborated with a children’s author on the project named Ivan Drajzl’.(https://www.rarediseaseday.org/downloads/schools-toolkit-explaining-living-with-a-rare-disease-to-young-children/)
There are lesson plans to go with the book to get you started and then some links to other projects for further professional development. A fantastic way to educate the next generation.
Previous Rare Disease Days are still celebrated and have been going for 15 years now! Starting in 2008 with just 18 countries signed up you can see the clear progression made and the countries involved. A huge achievement and a testament to all involved.
Health Charities In The UK
In the UK the Rare Disease Day campaign is run by Genetic Alliance UK, the national charity of over 200 patient/health organisations, who support all those affected by rare and/or genetic conditions. For all the latest news head to Rare Disease UK where you can read the UK’s strategy, find support, read blogs and find out about previous events.
A great day to help give those smaller organisation and health charities a bigger voice and for those who are ‘Rare’ to be celebrated, supported, accepted and understood. The wider the audience the better, to create a more inclusive environment, no matter what age, ability, community or country.
*As you read our blogs please remember that we are all on the same pathways you. Sometimes we find what we convey helpful but at other times we don’t. However, we include it because everyones journey is different and we like to have this passionate perseverance to help others as much as possible. To dispose of it all would be a waste and a dis-service to our readers.
The All Important Links
Find Our Heroes
Downloads Page
Information Pack For Rare Disease Day 2022
Light Up For Rare - Documents & Video Resources
Rare Disease Events Page
School ToolKits
Previous Rare Disease Days
Rare Disease Day UK